Finding Cooper's Voice by Kate Swenson

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The Parts I Do Not Understand

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The Parts I Do Not Understand

I do not have autism. I am not autistic. But my son is.

Kate Swenson
Feb 21
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The Parts I Do Not Understand

findingcoopersvoice.substack.com

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I do not have autism. I am not autistic. But my son is.

Being his mom in no way makes me expert. But I do my best. I try so hard to be the best mom I can possibly be to him.

Autism feels confusing to me a lot of the times. I believe we live in a black and white world for the most part. And my son lives in color. Blues and reds and yellows and greens.

We, his dad and I, have navigated autism for ten years now. We are long past the sting of the diagnosis. There is no shock anymore. We embrace the color he brings into our lives. But there is still confusion at times.

There are many parts of him that I do not understand. And then there are the parts that I so desperately want to be a part of.

I want to be a member of his secret club. I want to be invited in.

Like when he turns his ear to the wind and laughs as if someone is telling him an amazing joke. Or when he lies down in our yard and stares up at the sky. He will point to things I cannot see. And I wish, just for a second that I could see them too.

He studies raindrops and snowflakes and the bumps on the branch of a tree. I swear he can see the individual flecks of sand at the beach.

His world is different than mine.

I cannot see what he sees. But I believe it must be breathtaking.

I’ve learned that the world is too much a lot of the times for Cooper. When he struggles, I often do not know why. I just have to believe him.

Too loud. Too bright. Too smelly. Too chaotic.

And the wind and the clouds and the raindrops and the snowflakes are his peace. Grounding himself with nature.

So, when we are the park, and he decides to take a break to go sit by himself, I give him all the space and time that he needs.

I’m not next to him, but I know he is feeling the tiny stones that have gathered on the cement. I know soon he will touch his cheek to the cool metal of the picnic table and sign.

And when he’s ready, he will return.

He may climb the jungle gym again. Or he may sign ‘all done.’ Or even point to home.

I don’t always understand autism. There are days when I feel like I am playing a game where I haven’t been given the rules.

For years I fought the parts I did not understand. No more though. I just remind myself that I have an expert leading me through.

Thank you for reading this post. If you loved it, I would be honored if you shared it with someone you think may need these words, too.

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My book, Forever Boy: A Mother’s Memoir of Autism and Finding Joy is available to order HERE.

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The Parts I Do Not Understand

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6 Comments
TAS
Feb 21

You are a wonderful Mom to Cooper. I have been following you on Instagram and Facebook for a while but have never commented. Your posts always touch my heart. My 27 year old daughter is autistic. When she was diagnosed little was known about autism and schools did not have programs in place to teach students with autism. We fortunately live in a great school district that worked with us throughout her school years and we found our way. It was a lonely journey at times and I wish I had someone like you to connect with and not feel so alone. Always follow your heart and be a part of Cooper's world. My daughter began speaking at 5 years old. She had many sensory issues that caused her so much anxiety and behavior issues. Without her words it was so hard to understand her needs but it turns out that a parent's intuition and heart lead you in the right direction. Once she found words I was able to understand more fully her behaviors. It turns out that we were doing the right thing all along by giving her space to be herself, letting her take breaks from the environment/situations when needed, letting her explore on her own and introducing new situations slowly. When Cooper struggles you are right to just believe him because the world is “Too loud. Too bright. Too smelly. Too chaotic.” As you continue to navigate through autism, always remember you are Cooper's best advocate and always fight for his needs. You know him better than anyone else. Thank you for sharing your story and Cooper with all of us.

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Linda Rintala
Feb 21

Wonderful words. My 4 y/o Grandson is autistic and he is so similar to Cooper. You have helped me to learm more than anything else on how to navigate his growth. He is so special

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